Will autism changes bring harm?

Kathi Pierce noticed almost from birth that her son Wesley was havingsome problems when he had trouble breast-feeding.

It took years of trying various medical exams before Wesley wasdiagnosed with low-functioning autism.

Now Pierce worries about changes being considered to the definitionsand diagnostic criteria of autism and other spectrum disorders.

Those proposed changes could have large ramifications for localfamilies, said Joshua Diehl, the University of Notre Dame psychologyprofessor who eventually told Pierce with certainty that Wesley hadautism.

"We've seen it coming since a couple of years back," Diehl said of thechanges. "We began to see it as more research came out about theautism spectrum."

The proposed changes from the American Psychiatric Association (APA)are to the various disorders lumped under the "autism" umbrella, mostwell-known being Asperger's disorder and Pervasive DevelopmentalDisorder - Not Otherwise Specified (PDD-NOS). The changes wouldeliminate separate terms and lump all diagnoses under the term "autismspectrum disorder."

The proposed changes would also create a new category, "socialcommunication disorder," which would cover those who don't exactly fitsymptoms of autism, but still have trouble communicating andinteracting with others.

Some experts believe up to 40 percent of those currently consideredautistic will be affected and might lose their diagnoses, which couldaffect insurance coverage and other services, according to TheAssociated Press.

Diehl said many of those diagnosed with specific types of autism wouldlose specialized services and environments they depend on.

"A lot of people embraced the Asperger's diagnosis culture," Diehlsaid. "They came out of it as bigger than the diagnosis itself. Autismcarries a little more of a stigma with it -- Asperger's is a lessstigmatizing diagnosis."

Another potential problem with the proposed changes is the damage theycould do to the reputation of the psychology field as a whole,according to Diehl.

"In some ways, there is a danger to undermining the psychologyprofession," he said. "A lot of families have been struggling foryears to find a diagnosis."

Understandably, the definitions needed to be upgraded, according to Diehl.

"The idea is that we created the autism spectrum, and we have acatch-all category (PDD-NOS) that wasn't exactly autism," he said."Too many people were put in there -- it sort of became autism.

"The definition is too vague. The purpose of these updates is to givemore defined ideas, make them more easy to use."

These changes arrive as information released from the U.S. governmentreveals more children than ever -- one in 88 -- are being diagnosed withautism.

Diehl said he would like to talk to parents of children with autism.

"These are good changes," he said. "But we just need to talk about it,and to get a discussion started. The scary thing is that people don'tknow if they will be affected. I do think there will be some peopleaffected."

Pierce said the changes maker her nervous.

"If insurance decides not to cover (Wesley's care), we would havetrouble," she said.

When Wesley struggled with full inclusion in regular classes in publicschool, Pierce said, she began looking for other options.

He is now educated at the Elkhart office of Behavioral Analysis Centerfor Autism, which uses Applied Behavior Analysis techniques to teachautistic children how to learn.

BACA Director Nancy Warren said BACA will still provide the sametreatment, no matter what a patient's diagnosis or how it changes.

"We base our research on many different types of people," she said."For us, the label doesn't really matter."

Warren said, despite treatment not changing, it might cause moretrouble for parents if a change in diagnosis affects insurance.

"Changing someone's diagnosis label doesn't change their need forservice," she said. "This adds a new dimension of challenge forfamilies and society who want to provide services."

The fact that her son has seen success in the program makes theproposed changes that much more scary, Pierce said. Insurancecurrently pays for all of Wesley's education. If his diagnosis were tochange and no longer be labeled "autism," she said she is concerned hemight not have this service covered.

"If insurance decides not to cover it, I have always wondered whatwould happen," she said. "It's a huge concern -- parents cannot affordto cover this out of pocket."

Indiana does have a state mandate that requires insurance companies tocover autism care, according to Pierce.

But different types of insurance have different levels of requirement.If insurance is labeled "fully funded" insurance, or comes from ahealth plan provided through a group policy, then the coverage isfull, according to the Indiana University-based Indiana ResourceCenter for Autism. But if a company is "self-insured," that is, thecompany essentially acts as the insurer and provides coverage foremployees, sometimes mediated by an actual insurance company, thecompany is not required to cover anything.

Pierce said she was once in an autism group in which only one familyout of the 10 in attendance had fully funded insurance.

"So most aren't covered," she said. "There are some families thatcan't get their children services."

Cathy Pratt, the Indiana Resource Center for Autism's director, saidstate officials and agencies will continue to work hard to educateparents and families.

"IRCA will be very active in assisting people when the definitionscome out," she said.

Pratt said professionals can't really know what the definitions willsay until they arrive, which may not be until 2013.

"Right now, people are guessing what the impact will be," she said."In Indiana, people are thinking that those who are at the upper endof the spectrum will lose services. However, there's the other realitywhere those people at the upper end have never really receivedservices."

Even with all of the uncertainty in the future, Pierce said, she turnsto her son's happiness to find a bit of peace.

"My son is very joyful," she said. "He's a very happy kid. He enjoysthe little things in life, like sitting outside watching the trees.He's made me appreciate how beautiful the world is. He's really helpedme enjoy the moment more."